A Drastic Change

I wasn’t ready for this stage quite yet.

I’ve tried to prepare myself for our future with dementia by educating myself on the disease. I have read books. I have gone to support groups. I network with others online. I think, for most part, I know what to expect. Yet I did not expect to have this issue at this phase in the game. I thought this part wouldn’t come until the end. That’s usually when a person refuses to eat. Or, at least, that’s what I thought.

I know that mom could pass through many phases in this diseases. I’ve read about others who regress back to toddlerhood and infancy, putting non-food objects in their mouth, getting into things they shouldn’t be touching. I know many caregivers have to “childproof” their living spaces to keep their loved one safe. Most, if not all, lose the ability to toilet themselves, shower themselves or take care of any hygiene for that matter. Towards the end phases, many have trouble walking, talking (some lose language completely), and many develop problems swallowing and lose the ability to eat.

Mom hasn’t passed through any of these phases yet. She still takes care of her own hygiene. She toilets and showers herself. She puts on a face of make-up and attempts to curl her hair everyday (though not quite like she used to). Aside from hiding car keys, medicines and credit cards, we haven’t had to childproof anything from mom. I thought she would have to pass through all of these phases before she struggled with the eating phase. I expected it. I guess it’s true what they say. No two cases of dementia are exactly alike.

Over the past couple of months, mom has altered her diet once again. One thing always remains the same, and that is her morning Slim Fast. [Although one minor modification to that is that sometimes she will skip it in the morning now and drink it for lunch instead]. A typical day consists of: Slim Fast in the morning, a sandwich for lunch (with turkey, tomato, sliced American cheese, mayo and lots of sandwich oil), occasionally fruit (strawberries or canned pineapple) or Poppycock for an afternoon snack, and an Ensure for dinner. If we are lucky, she might go out to dinner with us but that has almost become non-existent as well. We can’t even get her to go out to her favorite restaurant (Miguel’s) anymore!

In the past week, the only solid food mom has eaten is some strawberries (twice) and 1 1/2 or 2 sandwiches; this is total for the entire week. She might have tried to eat a handful of Poppycock popcorn once or twice. Half of that food was thrown up. She drinks her Slim Fast everyday, once a day, and drinks a small can of Ensure most nights for dinner. Half of that has been thrown up as well. She only drinks water (about 6-8 oz) when she takes her medication, 3 times a day (as far as I’ve noticed). Try as we might, we cannot get her to eat anything. We’ve tried soups, Gatorade, popsicles, lemon-ginger tea, breads, toast...we’ve even offered to take her shopping to pick out what she thought would sit well in her stomach. It’s no use. Mom has it in her head that if she eats, she will throw up. And when mom has something in her head, you cannot convince her otherwise.

My dad took her to a follow-up appointment with the doctor yesterday…if that did any good. All they did was order more lab work and give her more medicine: one medication to prevent her from throwing up, and one medication to help increase her appetite.

My dad is willing to do anything at this point to get her to eat, including to try this medication. I suppose it is worth a shot, but I’m a bit more hesitant-with good reason. With mom’s disease, the body loses it’s ability to make sense of bodily functions and signals. For example, mom cannot understand why her eyes water all the time; she thinks she’s “so weird” when she burps or yawns or if her stomach makes noises. She doesn’t understand these things anymore or what these functions represent. Along with this, they (those with semantic dementia) lose the sense of knowing when they are hungry or full. I firmly believe that mom’s ability to decode hunger is lost. I think a part of her stomach pains could actually be attributed to hunger pain. But she doesn’t recognize it as such. Instead of eating and ending the hunger pains, she skips meals because she’s afraid of upsetting her stomach.

If my hypothesis is correct, wouldn’t it be logical, then, to say that this medication will only worsen her stomach problems?

Mom now weighs in at 126 pounds. That means she has lost another 14 pounds in the past 5 months and I would say most of that has been in the past 2 months. If this drastic change in her eating continues, at what point will the doctors do more than just prescribe a pill? I’m not sure what this means for the future. Is it just a phase? Will she eventually start to eat again? Or has she taken a drastic turn?

Mom’s Stomach Issues

Mom has been having stomach issues for quite some time now. She will go days, and even weeks, with little problem and then suddenly a stomach “attack” comes on. Lately, these episodes are becoming closer together.

An episode usually starts in the evening or in the middle of the night. Usually. Mom starts to feel “severe” and in no time she is hovering over her small wastebasket at her bedside, gagging and throwing up phlegm and liquid. By the next day, she refuses to eat because she is afraid that if she does, it will upset her stomach and she will throw up again. So it continues for a few days: mom, throwing up while taking her usual medicines and refusing to eat.

I believe it’s a cycle. Mom’s stomach is upset. Mom throws up. Mom refuses to eat which makes her stomach even more upset causing her to become nauseous and eventually throw up again.

The part that is unclear is why she is getting sick in the first place. We’ve brainstormed many ideas: maybe she’s developed a lactose intolerance (we switched her milk to almond milk, unbeknownst to her) or maybe she’s eating spoiled food (this could still be a possibility, but we try our hardest to keep up on cleaning out the fridge). We have taken her to a specialist (the “stomach doctor”) who has done ultrasounds and CT scans. Nothing shows up. Yesterday, dad had another appointment with this doctor to follow up with past issues and again, he said that there was nothing obvious that was showing up that could be a source for her sickness. He recommended that they put mom under anesthesia and do some sort of exploratory procedure to see if anything else can be seen. Dad told him that he would consider it, but hasn’t made a decision on whether or not to put mom through this.

There are pros and cons to the procedure. The pro would be that we could possibly find a cause for her stomach issues. The cons are many: how will mom do under anesthesia? Could it cause further complications with mom’s condition or could it “push along” the disease process? If they do find something-say, maybe cancer-what good would that knowledge do [I know this sounds horrible, but if indeed they did find cancer would it be worth putting mom through chemo in her condition and with the quality of life that she has to look forward to?] These are all things to consider.

The biggest question remains: if we put her through this test, are they actually going to find something or is a lot of this in mom’s head? With semantic dementia, hypochondria is a big problem. This was explained to me at our last visit with UCLA, that with this form of dementia, their mind is losing memory/recognition of what certain bodily functions mean. For example, mom’s stomach may growl or hurt because she is hungry, yet she doesn’t understand that what she is feeling is related to hunger; she becomes confused with what she is feeling. Because of this lack of recognition, they become preoccupied with and fixated on every sensation they feel. Could it be that mom is simply hungry but cannot recognize the hunger pain? Rather than eating and putting an end to the hunger pains, mom starves herself for days, only occasionally drinking Slim Fast, Ensure or water, all the while continuing to take her medications. It becomes a cycle: not eating, feeling sick, not eating because she feels sick, feeling more sick because she’s not eating.

Within the past 2-3 months, mom’s eating habits have significantly worsened. She hardly eats (which could explain her increase in stomach problems). She’s losing more weight. She drinks Slim Fast for breakfast, Ensure most nights for dinner and eats only a sandwich at lunch time. Sometimes she will snack on fruit or Poppycock in the afternoon. I know that when I do not get enough to eat, I sure don’t feel good! Despite our efforts in getting her eat, she keeps herself on a mostly liquid diet. She doesn’t recognize most foods anymore (the other day she didn’t even know what chicken tacos were…and that was one of her ‘staple’ foods only a few months ago!) and when we try to convince her to eat something we’ve made, she protests,

“No, different things now upset my stomach, no. I don’t know how that will make my stomach feel.”

I have tried telling her over and over and OVER that her stomach upset is likely due to her medication with her liquid diet. She will hear nothing about it. No amount of coaxing or explaining will convince her. We have tried everything we can think of. We are at a loss of what to do. :(

Tummy Trouble

Yesterday the kids headed back to school, and I started to settle back into my weekly routine, beginning with my Monday at mom's house.

The morning greeted me with a fierce wind and a crisp chill in the air. As I pulled up to mom's house, I hurriedly got the boys out of the car, struggling as I tried to balance my one year old on my hip while carrying in some other items; all the while, the wind was wildly blowing my hair in my face, making it difficult to see what I was doing. We rushed up to the front door and rang the bell. And waited. And waited. And waited. I fumbled with my keys as I tried to find the right one for the screen door. Ever since dad re-keyed the front doors, I've been having trouble with my key. After a couple of minutes, which seemed much longer than a couple of minutes while battling the winds, I managed to get the lock opened and walked into the dark, empty living room.

This has become our routine: me, ringing the bell and fumbling with my keys, while mom sits in her back bedroom ignoring the sound of the bell. She doesn't want to come out and answer the door looking like a "plain Jane". She's been doing this to my Aunts and Uncle who have been going over weekly to help her as well. Fortunately for me, I have a key to the house. Unfortunately for them, they don't. They call on the phone; she ignores the calls. They usually end up texting or calling me and I tell them to keep ringing until she answers. Eventually she answers the door.

As soon as I entered the house, I opened up the blinds to let some sunlight into the room. I set up the "Thomas The Train" tracks and train for the boys to play on, then went in search for my mom. Of course I knew right where she was at. I knocked lightly on her bedroom door and said, "Mom, it's me," as I let myself into her room. I found her in the dark, sitting on the edge of her bed with her back slumped forward and arms folded across her chest. She looked over at me and immediately began filling me in on everything on her mind, jumping from topic to topic and barely pausing inbetween or allowing me to get a word in edgewise.

"Were you told how severely sick I am? I'm really severe, my stomach. Since Saturday. I've been so severe and sick and my tummy hurts real bad in here too," she rubs her tummy as she talks to me, "and yesterday I didn't even go to church 'cause I felt too severe and I even threw up last night too. And my nose and my eyes were real wet too, with watery stuff on them too and it's so weird, I'm so weird."

I tried interrupting her to ask her what she had eaten yesterday. I strongly believe there is a connection between her eating (or lack of) and her stomach problems. She stared at me with a blank face while I repeated the question to which she finally answered,

"Your dad made me eat some salad stuff for dinner 'cause I wasn't real hungry but I didn't eat much yesterday so he told me to eat some salad then. But my stomach has these pains here and I hope I'm not getting that real severe stomach sick thing that comes, thas happens around November-I hope I'm not getting that. I'm just so sad, I wish the doctors would help me with my stomach problems too, I'm just so sad. I feel so severe. I just hope I'm not dying, I hope I'm not gonna die but I haven't seen anyone spiritually, I haven't seen my mom, so no, I'm not dying but I feel so sad and so weird, with how I'm changing too."

Without skipping a beat, she continued, "I'm just getting so weird and I feel like I'm really looking so weird too and when I wake up my hair is sticking up like this," she pulls her hair straight up, "and I look like Sister [So-n-so] from school-from church. And even though yesterday I put some make-up on and your dad was real okay with me. He says he's still okay with me and that I still look like when I was a teenager, but I don't think so, no. He still tells me every morning 'love you dear' so he's still happy with me, thank goodness, even though I'm looking so weird and different. And I just hope that you're okay with me too with how I'm changing."

At this point in the conversation (this is a recurring conversation every time I see her), I reassure her that she looks like the same mom I grew up with and that she looks just fine without her make-up on.

I asked my mom if I could make her some toast to help settle her stomach.

"Toast...I'm trying to remember what toast is..."

I reminded her that it was bread with peanut butter and that she used to make it for me when I was sick and when I was pregnant and unable to keep any food down. She insisted that she wasn't feeling hungry and would not eat it. I decided to give her until lunch time before I forced her to eat anything.

I'm concerned about her eating situation. Her pickiness has made mealtime extremely difficult. There are approximately 10 different menu items that she will eat between breakfast, lunch and dinner. Lately, she feels too "severe" to eat at all. Like I mentioned earlier, I believe this is a combination of the medications she is taking and the foods she is/isn't eating. She starts the morning off with Slim Fast and medication. Slim Fast has been known to be the source of gas and stomach discomfort. Trying to argue this fact with mom is about as productive as trying to pull a full-grown oak tree out of the ground with your bare hands: it simply won't budge. I think the Slim Fast itself, along with the fact that it's pure liquid, and in combination with her medication, causes her stomach to become upset. Once her stomach is upset, she decides that she doesn't want to eat because it will make her feel worse. I know that when I am very hungry, I start to feel a little nauseous and headachey, which is what she expresses that she feels often. I think that she is also having hunger pains but has lost the ability to recognize it as pains due to her hunger. That is common with this disease (from what I have learned); to lose the ability to know when one is full or hungry. When she starts to feel sick like this, she "psychs" herself out and I think she actually talks herself into throwing up. It starts with exaggerated gagging noises, followed by her spitting out "watery stuff", and then usually finishes with her gagging her food/drink out.

Towards the beginning of this disease, mom put on a lot of weight. Again, this is most likely due to the fact that they lose the ability to tell when they are "full", and they tend to overeat. Then there comes a point where they lose weight. This can be due to many reasons: pickiness, losing the ability to swallow, etc. About 1 1/2-2 years ago, mom's weight was at her all time heaviest, around 180 lbs. She is now down to 140 lbs (which is even below her average weight) and I'd say a good part of that weight has been lost within the last 6-9 months. She thinks it's great and wonderful that she is losing weight, but it is not being done in the right manner and I worry with how quickly she's been losing it.

I left my mom in her room to rest for a while and went into the office, where I drafted a chart to track what mom is eating everyday as pictured...not the greatest picture in the world, but you get the idea ;)). Basically, it tracks what she is eating everyday for breakfast, lunch, dinner and snacks inbetween. As you can see, Sunday she hardly ate a thing, which is what I'm afraid has been happening far too much lately. I printed out a few copies and put them in a 3 ring binder. I shared this information with family members who go over to her house and asked that they could write down what she is eating and approximate quantities of her food. I'm hoping that this will help give us, and her doctors, a better idea of what is upsetting her and work on how to address it. Of course, I have my theory on her stomach issues, but having it written out will be beneficial in taking it to her doctor. Sometimes patients respond better when a doctor tells them what the problem is then when a family member tries to tell them.

I explained the chart and the reasoning behind it to my mom. I don't think she understood much of what I saying and I don't have high hopes that she will fill it out herself. That is why I talked to family members and my dad and asked them to track her eating everyday, as a group effort.

A little after noon, I went back into mom's room and brought to her attention that it was past lunchtime. She very faintly shook her head and said,

"No my stomach is still hurting, I'm not hungry."

I suggested that she might feel better if she eat and was pretty insistent with her that she needed to get some food in her stomach. I gently took her hand and pulled her up and off of her bed and down the hallway to the kitchen. To my complete amazement, mom was compliant; although she did not want peanut butter toast. She wanted her usual turkey, tomato and american-sliced cheese sandwich with lots of mustard and submarine oil. I was just happy that she ate.

I was not with her later in the day, so I don't know if she ate later on or if she started to feel any better, but hopefully it's all being written down on her chart. Hypochondria is a common symptom with her disease, and I know sometimes we all get tired of hearing the same conversations every time she talks (about how "severe" she is feeling). While we sometimes have to ignore some of the complaining, I think we also need to help her problem solve so she can be more comfortable. Her "severe" stomach problems could be a simple problem to solve. Solving is much harder than it sounds with a person with dementia, however, as they cannot comprehend much and are not very agreeable with what you want them to do. We are meeting with a geriatric doctor for the first time this week, who specializes in care for the elderly and people with dementia; this means all of her health issues and medications will be taken care of by ONE doctor, rather than the several she has been seeing. Hopefully this will help in managing the "severe" aches and pains she has been feeling.